Rare Disease Day Archives

Tarquin smiling, text reads: patient care is not just about understanding it's about empathy

What putting patients first really looks like

Posted | March 1, 2023

We’re proud to be a driving force in clinical trials, relentlessly pushing the industry towards adopting a patient-centric approach as standard. With ‘putting patients first’ as our mantra, we focus…

mdgroup Support

Love1

Rare Disease Day

Climbing on: Karin Haski on living with a rare disease and climbing for the USA

Posted | February 24, 2023

There is often less research on rare diseases' symptoms than on other diseases. This is why it’s crucial to listen to and understand the unique challenges individuals with rare diseases…

mdgroup Support

Love3

mdtalk

mdtalk Episode 12: Support for parents and guardians of children with rare diseases

Posted | February 23, 2023

Through the mdtalk podcast and video series, we’re on a mission to highlight the most critical issues impacting clinical research, the patient experience, and the future of healthcare. Listen to…

mdgroup Support

Love1

Blog

Rare Disease Day: Delivering Remarkable to Patients with Rare Diseases

Posted | February 28, 2022

We’re on a mission to facilitate remarkable experiences for patients taking part in clinical trials around the world, and this is especially important for those with rare diseases. Living with…

mdgroup Support

Love0

Blog

Rare Disease Day 2022: Jennifer’s Story

Posted | February 25, 2022

Jennifer Kinnebrew is a Contract Administrator at mdgroup, based in North Carolina. As part of her role, Jennifer assists in ensuring contracts with our clients and suppliers are in place…

mdgroup Support

Love3

Blog

Rare Disease Day 2022: Rafaela’s Story

Posted | February 24, 2022

Rafaela Vale is a Clinical Manager at mdgroup, working out of our Brazil office. She specialises in rare disease clinical trials, and has a special affinity to patients and their…

mdgroup Support

Love3

Blog

Creating Remarkable Patient Experiences: The Ultimate Guide

Posted | February 7, 2022

We should never underestimate the impact of clinical trial participation on patients and their families. Neither can we ignore that without their great courage and personal sacrifices, the development of…

mdgroup Support

Love0

Blog

An insight into the patient experience with Rachael Mole

Posted | February 25, 2021

To show our colours for Rare Disease Day 2021 and to gain greater insight into the patient experience, we facilitated a team Lunch and Learn with Rachael Mole, founder of…

mdgroup

Love0

Blog

Creating remarkable experiences for patients with rare diseases throughout the entire clinical journey, covid

Posted | February 24, 2021

The need for patients and their families to travel to and from clinical study sites, particularly those who live in remote places, has been a huge obstacle over the past…

mdgroup

Love0

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience. You can read more about cookies policy by clicking here.

Necessary

Always Enabled

Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.

Cookie	Duration	Description
__hssc	30 minutes	HubSpot sets this cookie to keep track of sessions and to determine if HubSpot should increment the session number and timestamps in the __hstc cookie.
__hssrc	session	This cookie is set by Hubspot whenever it changes the session cookie. The __hssrc cookie set to 1 indicates that the user has restarted the browser, and if the cookie does not exist, it is assumed to be a new session.
_cfuvid	session	Cookie is used to allow the Cloudflare WAF to distinguish individual users who share the same IP address.
_GRECAPTCHA	5 months 27 days	Google Recaptcha service sets this cookie to identify bots to protect the website against malicious spam attacks.
_hjClosedSurveyInvites	365 days	Set when a user interacts with a Link Survey invitation modal. Ensures the same invite does not reappear if it has already been shown. 365 days duration. List of Survey IDs, URL encoded.
_hjCookieTest	Deleted almost immediately after it is created	Checks to see if the Hotjar Tracking Code can use cookies. If it can, a value of 1 is set. Deleted almost immediately after it is created. Under 100ms duration, cookie expiration time set to session duration. Boolean true/false data type.
_hjDonePolls	365 days	Set when a user completes an on-site Survey. Ensures the same Survey does not reappear if it has already been filled in. 365 days duration. List of Survey IDs, URL encoded.
_hjHasCachedUserAttributes	session	Enables us to know whether the data set in _hjUserAttributes Local Storage item is up to date or not. Session duration. Boolean true/false data type.
_hjLocalStorageTest	Data stored in _hjLocalStorageTest has no expiration time, but it is deleted almost immediately after it is created.	Checks if the Hotjar Tracking Code can use Local Storage. If it can, a value of 1 is set. Data stored in _hjLocalStorageTest has no expiration time, but it is deleted almost immediately after it is created. Under 100ms duration. Boolean true/false data type.
_hjMinimizedPolls	365 days	Set when a user minimizes an on-site Survey. Ensures that the Survey stays minimized when the user navigates through your site. 365 days duration. List of Survey IDs, URL encoded.
_hjSession_{site_id}	30 minutes duration, extended on user activity.	Holds current session data. Ensures subsequent requests in the session window are attributed to the same session. 30 minutes duration, extended on user activity. JSON data type.
_hjSessionStorageTest	Data stored in _hjSessionStorageTest has no expiration time, but it is deleted almost immediately after it is created.	Checks if the Hotjar Tracking Code can use Session Storage. If it can, a value of 1 is set. Data stored in _hjSessionStorageTest has no expiration time, but it is deleted almost immediately after it is created. Under 100ms duration. Boolean true/false data type.
_hjSessionUser_{site_id}	365 days	Set when a user first lands on a page. Persists the Hotjar User ID which is unique to that site. Hotjar does not track users across different sites. Ensures data from subsequent visits to the same site are attributed to the same user ID. 365 days duration. JSON data type.
_hjShownFeedbackMessage	One day	Set when a user minimizes or completes a Feedback widget. Ensures the Feedback widget will load as minimized if the user navigates to another page where it is set to show. One day duration. Boolean true/false data type.
_hjTLDTest	session	We try to store the _hjTLDTest cookie for different URL substring alternatives until it fails. Enables us to try to determine the most generic cookie path to use, instead of page hostname. It means that cookies can be shared across subdomains (where applicable). After this check, the cookie is removed. Session duration. Boolean true/false data type.
_hjUserAttributes	No explicit expiration	Stores User Attributes sent through the Hotjar Identify API. No explicit expiration. Base64 encoded JSON data type.
_hjUserAttributesHash	2 minutes duration, extended every 30 seconds	Enables us to know when any User Attribute has changed and needs to be updated. 2 minutes duration, extended every 30 seconds. Content hash data type.
cookielawinfo-checkbox-advertisement	1 year	Set by the GDPR Cookie Consent plugin, this cookie records the user consent for the cookies in the "Advertisement" category.
cookielawinfo-checkbox-analytics	1 year	Set by the GDPR Cookie Consent plugin, this cookie records the user consent for the cookies in the "Analytics" category.
cookielawinfo-checkbox-functional	1 year	The GDPR Cookie Consent plugin sets the cookie to record the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessary	1 year	Set by the GDPR Cookie Consent plugin, this cookie records the user consent for the cookies in the "Necessary" category.
cookielawinfo-checkbox-non-necessary	1 year	GDPR Cookie Consent plugin sets this cookie to record the user consent for the cookies in the "Necessary" category.
CookieLawInfoConsent	1 year	Records the default button state of the corresponding category along with the status of CCPA.
hjActiveViewportIds	Stores an expiration Timestamp	Stores user active viewports IDs. Stores an expiration Timestamp that is used to validate active viewports on script initialization. JSON data type.
hjViewportId	session	Stores user viewport details such as size and dimensions. Session duration. UUID data type.
PHPSESSID	1 day	This cookie is native to PHP applications and is used to store and identify a users' unique session in order to manage user sessions on the website.
viewed_cookie_policy	1 year	This primary cookie monitors the user’s consent to the use of cookies when they click on the following buttons: "Accept": to give consent. "No": to deny consent. No personal information is collected by this cookie and its activation depends only on response to the user’s action (Accept/No).

Non-necessary

Analytics

Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics such as the number of visitors, bounce rate, traffic source, etc.

Cookie	Duration	Description
__hstc	5 months 27 days	Hubspot set this main cookie for tracking visitors. It contains the domain, initial timestamp (first visit), last timestamp (last visit), current timestamp (this visit), and session number (increments for each subsequent session).
_ga	1 year 1 month 4 days	Google Analytics sets this cookie to calculate visitor, session and campaign data and track site usage for the site's analytics report. The cookie stores information anonymously and assigns a randomly generated number to recognise unique visitors.
_ga_*	1 year 1 month 4 days	Google Analytics sets this cookie to store and count page views.
_gcl_au	3 months	This cookie is used by Google Analytics to understand user interaction with the website.
AnalyticsSyncHistory	1 month	Linkedin set this cookie to store information about the time a sync took place with the lms_analytics cookie.
hubspotutk	5 months 27 days	HubSpot sets this cookie to keep track of the visitors to the website. This cookie is passed to HubSpot on form submission and used when deduplicating contacts.
ln_or	1 day	Linkedin sets this cookie to registers statistical data on users' behaviour on the website for internal analytics.

Functional

Functional cookies help perform certain functionalities like sharing the content of the website on social media platforms, collecting feedback, and other third-party features.

Cookie	Duration	Description
__cf_bm	30 minutes	Cloudflare set the cookie to support Cloudflare Bot Management.
li_gc	5 months 27 days	Linkedin set this cookie for storing visitor's consent regarding using cookies for non-essential purposes.
lidc	1 day	LinkedIn sets the lidc cookie to facilitate data center selection.
UserMatchHistory	1 month	LinkedIn sets this cookie for LinkedIn Ads ID syncing.

Advertisement cookies are used to provide visitors with customized advertisements based on the pages you visited previously and to analyze the effectiveness of the ad campaigns.

Cookie	Duration	Description
_fbp	3 months	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.
bcookie	1 year	LinkedIn sets this cookie from LinkedIn share buttons and ad tags to recognize browser IDs.
bscookie	1 year	LinkedIn sets this cookie to store performed actions on the website.
datr	1 month 4 days	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.
fr	3 months	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.
li_sugr	3 months	LinkedIn sets this cookie to collect user behaviour data to optimise the website and make advertisements on the website more relevant.
sb	1 month 4 days	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.
usida	session	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.
wd	7 days	Facebook sets this cookie to measure, optimise and build audiences for ad campaigns.

Rare Disease Day

Subscribe for news, views and more

Cookies